At 20 years old, Adele Clydesdale had just climbed Mount Kilimanjaro; she was starting her second year of university and playing in the Victorian Netball League.

So when she got glandular fever, she didn’t think much of it. She knew plenty of people who’d had it in high school and they always recovered quickly.

“It was a very common thing so I just thought I’ll just rest for a month or two and then I’ll be recovered and back on the netball court as soon as possible,” she tells Insight.

But even when tests results revealed the glandular fever was out of her system, Adele was still unwell and her symptoms were getting worse. She was increasingly fatigued, couldn’t string sentences together and had extreme body pain.

At six months, it was confirmed Adele had chronic fatigue syndrome, a diagnosis she found quite confronting.

She explains, “I felt like there was quite a stigma around it and when I tried to share it with my peers and friends, there was that perception that ‘I get tired too, maybe I’ve got chronic fatigue as well’.”

Chronic fatigue syndrome (CFS) is estimated to affect between 0.2-2 per cent of the population in Australia yet very little is known about this condition.

Otherwise known as Myalgic Encephalomyelitis or ME, it is an illness characterised by profound fatigue, not relieved by sleep or rest and worsened with activity.

Patients will commonly experience muscle and joint pain, impaired memory and concentration and gastrointestinal disorders. However, the most defining indicator of CFS is Post Exertional Malaise (PEM) - when a certain level of cognitive or physical exertion will exacerbate a patient’s symptoms.

There are currently no proven treatments for CFS which means many are left without answers. Ketra Wooding has been unwell for eight years and with such severe symptoms, she has been living in a nursing home for five of those years.

She recalls when her doctor diagnosed her: “I said to him, ‘how long is this going to last?’ And he said it’ll probably be five to seven months, and I was devastated. I’m so glad I didn’t know how long it really was going to be.”

Insight looks at what it’s like to have chronic fatigue syndrome and if there is no cure, what is the best way to manage it? Chronic Fatigue Syndrome, Tuesday, 8:30pm on SBS and SBS On Demand.

Credits

“I think the first half hour with any new doctor is establishing that it’s not Munchausen’s by proxy, it’s not school avoidance, it’s an actual real thing, it’s not a mental disorder for me or from him.”

Adele Clydesdale

“I felt like there was quite a stigma around it and when I tried to share it with my peers and friends, there was that perception that ‘I get tired too, maybe I’ve got chronic fatigue as well’.”

Deb Adams

“It’s a funny thing, that word ‘diagnosis,’ … she said ‘you have chronic fatigue.’ And it’s like, okay, but is that a diagnosis? Do I have it, or is it just a guess at this point in time?”

Dr Mark Donohoe

“Medical doctors can be a problem in this area. Their attitude towards people that don’t fit the easy medical model can harm people.”

Ketra Wooding

“I said to him, ‘how long is this going to last?’ And he said 'it’ll probably be five to seven months', and I was devastated. I’m so glad I didn’t know how long it really was going to be.”

Alastair Lynch

“The mental side of things started to go the wrong way … you’re just waking up every day and you still can’t see the finish line. And it just starts to take a toll.”

Andrew Bretherton

“I’ve just lost so much of my life and my identity of who I used to be … so much of what I wanted to do in my life, I just don’t have the energy for.”